The parallel timeline of my life has been the progression of my mother's disease Multiple Sclerosis ("MS"). My mother taught me how to walk, play soccer and ski. By the time I was twelve or thirteen she became increasingly dependent on walking aids and eventually a wheelchair. Enduring excruciating physical pain, my mother has maintainted a persistent brilliance that radiates to all those who meet her—exuding positivity where others would form bitterness.
My mom and I outside Norwich Cathedral in 2013
My Wife Sophie's Journey with Chronic Illness
While working in India together in 2012, my wife caught Typhoid, a nasty disease that began a three year journey of chronic illness. When my wife and I returned from our honeymoon in August 2014 the chronic illness we'd been doing our best to cope with escalated to another level. Her digestive system started shutting down and we were suddenly scrambling for answers. She had such little energy that she had to drop out of her seventh and final year of university studying architecture.
My wife, friend and I facilitating a workshop in India in 2012
We saw specialist after specialist and no matter what test they ran they couldn't seem to put a finger on what was wrong with her. No matter what they tried things kept getting worse.
The Nightmare of Autoimmunity
One doctor ran an autoimmune panel and discovered several antibodies that indicated the illness might be autoimmune related. Words like "antiphospholipid syndrome" and "inflammatory bowel disease" triggered my worst nightmare.
I had seen the havoc that my mother's autoimmune disease wreaked on our lives and I secretly feared that I would develop MS or some nasty disease in my twenties like my mother did.
Here I was newly married to a wonderful and vibrant woman that I'd met while volunteering in Israel—we were supposed to be living the first year of our life as a married couple, happy and in love. Instead we were frantically trying to stop this slippery decline into chronic illness.
Taking Health Into Our Own Hands
This dark dream transformed into a hidden blessing that is only now beginning to reveal itself in full. Sophie's illness led us on a different path of dealing with autoimmune issues, one that is rooted in clinical medicine and is evidence based. It's called Functional Medicine.
Within three weeks on a functional protocol, my wife began showing the first signs of recovery since she began her downhill slide after catching Typhoid in India in 2012. Sophie's recovery soothed my skepticism and also perked my interest: could this approach help my mom live a better life with her MS?.
Discovering The Wahls Protocol
During Sophie's recovery, a close family friend asked if we'd seen Terry Wahls's Ted Talk and said that we absolutely had to watch it.
Throughout my life I've witnessed well-intentioned people get excited about something they heard on the radio or watched on TV that could help my mom with MS. They would talk about how bee stings could help, and how we should check out the medicine that has been developed in the UK but is still undergoing FDA studies, etc.
If my wife hadn't had such a significant recovery with Functional Medicine, I'm not sure if we would have watched Terry Wahls's Ted Talk, but we did. And it not only changed our lives but has changed my mother's life (and my father's as a result) forever.
Dr. Terry Wahls and Her Story
Terry Wahls shares her story as an MD being diagnosed with MS, treating according to the traditional medicine that she'd spent much of her life studying, losing her ability to walk, and verging on the brink of death. She found Functional Medicine online and began to develop a personal protocol to treat her MS using functional principles.
Within a short amount of time, Terry Wahls began to walk again and even returned to work. This is unprecedented in the history of MS. She has not only tested her protocol in clinical trials, but she has also garnered the support of several major MS charities to prioritize diet in MS research ongoing.
We had the pleasure of meeting Dr. Wahls, her wife and her neice in London this summer to hear her story and talk about partnering to help people with MS live better lives.
My Mother's Experience on The Wahls Protocol
We were fortunate enough to have a community of friends and family who came alongside my mom to cook her meals every single day for over three months. For the first three months my mom struggled with eating the required 9 cups of vegetables per day (3 leafy greens, 3 sulfur rich, and 3 colored veg), so we backed down to just 6 per day.
She experienced a lot of detox symptoms initially, which Wahls describes in her book, and then small yet incremental recoveries started appearing across my mom's experience on a daily basis. It started out with little snippets of memory that would come back to her as she spent her recommended time outside staring into a blue sky—memories long forgotten, swept away by the tides of time and buried by the neurological devastation of the disease.
Then my mom started having more energy, feeling stronger during the day, sleeping better, and overall feeling more happy and positive in her life. She found it lest exhausting to go on an outing to the doctor's or to the grocery store.
Almost two years since starting the protocol, my mom says she's better than she's been in almost ten years. Considering that the last eight or nine years of her life have been a downward spiral into primary progressive MS and its corresponding disabilities, it's a life changing turn around. My mom's got her life back again and seems to be getting stronger each day.
My mom's journey with the Wahls Protocol over the past two years has transformed many skeptics into supporters (including myself). As a result of the profound transformation, my wife Sophie and I have decided to dedicate the next chapter of our lives towards discovering how we might help other people with MS live better lives.
Our Next Chapter
At first, we thought of creating a place where people with MS could come for an immersive experience to start The Wahls Protocol and to discover purpose and meaning in their life amidst their current circumstance with their disease. It could be a place where peopl share the triumphs and hardships of life with others who suffer from MS, and to learn about the science of recovery. The main goal would be to support people as they take their health into their own hands—maintaining it in the everyday stuff of life.
I put this MS retreate centre idea together into a pitch deck and sent it to professionals whose opinion I respect to get feedback in preparation for pitching to potential partners and investors. My wife and I went on to pitch the business concept at the Cambridge Social Ventures weekend in September and got some really encouraging feedback.
The weekend in Cambridge kindled our momentum towards taking on this initiative full-time in 2017, but it also helped me reflect and question the validity of our proposed solution. I began amplifying the thoughts that wondered:
"Is a retreat centre the right solution? How confident are we that people like my mom would benefit most from a retreat centre? What if there are other models that would be a better fit?"
Starting With Human Needs, Focusing on MS & Lifestyle
As a result, we've decided to apply a human-centered design process to uncover the unmet needs of people with MS and to understand what its like to live with a debilitating autoimmune condition in the everyday stuff of life. We'll move forward with a deeper level of real human needs to prototype a solution and evolve a business model from that process.
Designing the research process flow with some sticky notes.
We've put together a landing page with a short video describing the initiative and are starting with a local focus in East Anglia, our new home. We're reaching out to local communities who support people with MS and are asking people we know to consider sharing our work with their loved ones.
(If you're not in East Anglia, we'd still love to talk to you!)
Share Your MS Experience
If you or someone you know has MS and would be interested in sharing your experiences, we'd be honored to speak with you. Anything that you would share with us would be completely confidential and secure. It's just to help us gain a deeper level of understanding about the different facets of MS and the challenges that people with it face on a daily basis.
While I understand the way MS manifests in my mom's case, I also know that its an incredibly complex disease that has a wide range of symptoms and each case is unique.
Outcomes to Emerge
We're not exactly sure what the outcome of this study will be. It might be the retreat center that we initially envisioned, and it might be something we've never thought of before. It could manifest itself in so many different ways and your stories and experiences will act as the raw material to help calibrate our efforts moving forward.
If there's anything that I've learned in my journey its that whenever you set out to do something you have to start with real human needs and go from there. It's so easy to make up an image of something in your head and then discover down the road that your image didn't fit with the image of the people you were trying to serve.
We want to avoid that realization and start early with understanding real people and their needs.
Get In Touch
If this is you or if you know someone who might be interested, please get in touch on the website: http://shareMSexperience.com
We'd be honored to hear from you. We look forward to venturing into the world of MS together.